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Saturday, June 23, 2012

The Disability Bond Can Be Heartwarming

Yesterday my son and I went to the local grocery store. It is great to have him home for a fews days despite the fact he can drive me crazy. Regardless, we were wandering around the grocery store as I wanted to cook something different and use some coupons. We ended up in the produce section where I saw a young girl and her mother. The girl was about six years old. She was sitting in a high end wheelchair tooling around at break neck speeds and bumping into all sorts of stuff. I was so excited! Sightings of adults using a wheelchair are rare in my area. Sightings of a child that uses an obviously high end wheelchair are unheard of. In fact this was a first in 18 years. I gave the young girl a huge smile. She totally ignored me. Awesome, I thought I am just another adult. I asked the mom about the wheelchair, it was an ultra light wheelchair with what looked like a seat insert. The girls posture was perfect. The wheelchair fitted her perfectly. I was ridiculously excited. For me, with one glance I can tell is a person is in the correct manual wheelchair and is seated properly. This is actually quite complicated and a wheelchair seating specialist can enhance a persons life. I engaged the mom and praised her daughter and her perfect positioning. She seemed quite pleased. As we talked, I was thrilled to see that she let her daughter explore on her own but always within sight. We talked shop a bit--little things about how hands get dirty from pushing all day, what rims might eliminate some dirt. I stated such issues were occupational hazards. She laughed.  It was nothing short of wonderful--just a two or three minute chat with a stranger.

I spent much of the afternoon wondering why I was delighted by this social encounter. Really, I was over the top happy. I realized that I am often in a sense lonely. Where are others like me? Where are the kids with a disability that will grow and become responsible adults? Where are my crippled peers? In this sense I am lonely. Of course I have friends and colleagues that have a disability but they are scattered all over the country. I am weary of always being the only person that uses a wheelchair at a social event. I am tired of being shunted off to an obscure entrance, told to wait while someone mythic person finds the key to a lift. I watched others poured into the building. Does any one else see how wrong this is? No. This is the weakness of so called "reasonable accommodations". I find many "reasonable accommodations" very unreasonable if not deeply objectionable. On bad days I think things will never change. But yesterday was not a bad day. I saw the future. I saw a mom with her daughter that used a wheelchair. I saw a good wheelchair that fit this young girl perfectly. I saw normal human interaction and was part of it! This is what the ADA was designed to do. Insure equality for all people with a disability. In my mind I want to believe the young girl I met goes to the totally accessible local public school. She gets on a bus with her peers. She participates in all class trips. She has many friends and is not taunted by others. She participates in all gym activities. She is included in any after school activity she wishes. The thought of this experience so different from my own makes my heart soar. I hope it is the reality she will experience.

Thursday, June 21, 2012

Blatant Discrimination: Who Receives Support and Why

 Yesterday I read a story about Becky Andrews, a blind woman who was blatantly discriminated against  at an Ann Taylor store in Salt Lake City.  Apparently Ms. Andrews likes the clothes Ann Taylor sells. She walked into the store with her guide dog, in harness, and was asked to leave. According to Ms. Andrews she politely explained her dog was a service animal and was legally allowed to enter any public establishment. Her words did not resonate with the employees or the manager she spoke to. In frustration, and I assume anger, she eventually left the store. I share Ms. Andrews outrage. I too have been subjected to blatant discrimination. While I am no longer shocked by people who discriminate against me, I find the experience deeply unsettling. For more about what Ms. Taylor experienced read her blog Cruisn' with Cricket. See her post of June 19, "Finding Lemonade". Link:

Ms. Andrews story is all over the internet and could go viral. Multiple mainstream news outlets have used her story and she has appeared on a local Salt Lake television news program. A few things have struck me about Ms. Andrews. For example, she is a slender and attractive woman. Her blog has photos of her with her family and guide dog Cricket, a yellow lab. This makes me wonder--is her story of blatant discrimination enhanced by her appearance? Ms. Andrews has also been clear she has no intention of suing Ann Taylor even though she has every right to file a lawsuit--what took place was a serious civil rights violation covered under the ADA. Instead, Ms. Andrews has offered to help educate Ann Taylor employees. In my humble opinion, Ms. Andrews is being far too nice and this too has me wondering. I hesitate to read comments after disability stories--they are routinely horrible and ignorant. However, in this case the comments are 100% supportive. Ms Andrews is the paragon of virtue. She has literally turned the other cheek and has taken the high road. She asked for nothing from Ann Taylor. She will not file a law suit. Her comments exude dignity and grace. As the days have passed Ann Taylor looks worse and worse and Ms. Andrews more dignified. And this too makes me wonder. What if she lashed out in anger? What if she tweeted when she was discriminated against? What if she filed a law suit? What if she appeared at the front of the Ann Taylor with a lawyer and dozens of other blind people?  What if she organized a disruptive protest? Somehow I sincerely doubt all the comments would be supportive. And again this has me wondering. Ed Roberts, a founder of the disability rights movement, believed anger was a powerful and useful emotion. Angry people get stuff done when focused on a constructive goal like access. Where is Ms. Andrews anger? One can be angry and polite. One can use anger to force significant social change. But that is not how society perceives people with a disability. Yes, the thinking goes we are angry. Angry we cannot walk, hear or see. We are bitter and angry because our bodies cannot do what other bodies do without thought or appreciation. We are angry over our physical misfortune. This thinking is so wrong it boggles the mind. I find it hard to fathom how any intelligent person thinks this way. Experience tells me otherwise.

I was also struck that every story I read about Ms. Andrews included a diagnosis. All stories in the main stream press noted she had Retinitis Pigmentosa. I fail to understand why this is an any way relevant to the discrimination she experienced at the Ann Taylor store. Did she need to prove she had a legitimate disability? Noting why she is visually impaired utterly misses the point. Laws protecting the civil rights of people that rely on a guide dog date back to the 1960s. I may be wrong on this point and I am sure Stephen Kuusisto could weigh in with a fascinating history. More to the point, the ADA is now over twenty years old. Ms Andrews has every right to expect that her civil rights will not be violated so long after the ADA was passed. Ms. Andrews and I share the same civil rights as those that can walk and see. No news story I read raised this point. No comment focused on the real issue--the violation of Ms. Andrews civil rights.

One last point. I wonder if the public support for Ms. Andrews civil rights is rooted in the knowledge any so called reasonable accommodation for people who cannot see does not incur a significant cost. Everyone knows ramps and elevators are expensive. Worse yet, they are rarely used. So the thinking goes this is an utter waste of money. No one questions why the lifts and elevators are not used. In my experience maybe one in ten bus drivers know how to tie down my wheelchair. In my experience a locked elevator is a useless waste of space. Locked  alternative access to buildings is also an utter failure. Call bells are not answered. These violations are socially acceptable. No one ever supports me when these fundamental violations occur. My point is not to distance myself from Ms. Andrews and other people who cannot see. Instead I am pointing out that all violations of civil rights must be met with condemnation. The root cause is identical.  Disability rights are civil rights.

Tuesday, June 19, 2012

Disability and Health Care: Michael Berube Rules

Over the weekend Michael Berube published an outstanding article, "Our Great Healthcare Denial" in Salon. See Berube makes many astute observations about healthcare and disability. The most stunning and accurate observation was: "We simply do not think about disability when we talk about health care".  This silence affects liberals and conservatives alike. So the issue become why, why do we not talk about disability and healthcare? In a word denial. When I read this I stopped dead in my tracks. Wow, can the controversy over healthcare really be that basic? I do not know but Berube was persuasive. He wrote:

"if you stopped for a moment and shuddered at the thought that you or a loved one might lose your faculties, physical or cognitive, then that’s probably a good indicator of what’s going on here: Individually and collectively, we are in denial. And in a sense we have to be. No one of sound mind and body can wake up every day with a visceral awareness that their soundness of mind and body is a happy accident. None of us wants to start up the car in the knowledge that a random patch of ice can put us or our children into comas, and none of us wants to make our retirement plans on the assumption that we will be too infirm to enjoy it."

Berube goes on to note that when we think of the uninsured the first person that pops into our collective thought is a healthy young man or woman in their 20s, the picture of perfect health. The thinking goes, these people do not need healthcare and hence go without. The logic Berube describes is as follows:

"Americans think of health insurance as a personal calculation, like putting only just so much change in parking meters. You make that gamble, you leave your car too long, you get a ticket, it’s your problem. Or you make that decision, you go without insurance, you get sick, fine, you knew the risks. You pays your money and you takes your chances, and don’t come around here looking for a handout when you lose your shirt. Quite apart from the cruelty of this devil-take-the-hindmost approach to health care, what’s really stunning is how profoundly foolish it is. Sure, people know (or know that they have to pretend not to know) the risks of smoking, or drinking heavily, or eating bacon double cheeseburgers, or riding their motorcycle without a helmet. But most disabilities don’t work that way. They’re not the result of calculations and risk management."

I love the line "most disabilities don't work that way". Amen. Looking back to the first time I got sick I had no clue nor did my parents of how my life would be radically altered. I did nothing wrong. I woke up like any other day, a child interested in Sunday morning cartoons. People do not plan to become paralyzed. People do not plan on becoming disabled in the myriad of ways it is possible for this to happen. It is not supposed to be part of the life process. Well, I am living proof as are many others of the folly that disability is not relevant or part of life. In fact, if you live long enough the odds are very good one will age into a disability, physical or cognitive or perhaps both. To me, Berube is tapping into the American ideal of fierce independence. We are in control of our own destiny. This is utter nonsense to me. None of us are independent entities but rather a complex result of a multitude of social factors. Berube wrote:

"Once you’re born, health care and health insurance is a personal matter, and your encounters with nature’s mishaps are nobody’s business but your own. That’s why you haven’t heard from any American conservatives with the honesty or integrity to admit that the Affordable Care Act, known derisively in some (or all) quarters as “Obamacare,” prohibits insurance companies from denying coverage to disabled children under 19. Or that starting in 2014, the law will prevent insurers from excluding anyone from coverage or charging higher premiums for any pre-existing condition — including a disability."

This is the sort of discussion I would love to engage in. I would like to discuss why the Supreme Court controls the near and long term future of my son's health care. I would like discuss why I am effectively barred from comprehensive insurance until 2014--assuming healthcare reform moves forward (this is no sure thing). I would like to know how insurance companies justify charging me as  paralyzed man a higher premium than a man who is bipedal. So much for the notion of being equal. How about we talk about disability? How about having a civil discussion. Instead we get Rick Santorum and Sarah Palin who use their disabled children to forward their political platforms and sway voters with empty emotional rhetoric: "Liberals want to kill our babies". This makes a great headline but has no semblance to the reality people with a disability live. Let's talk about healthcare bills being the leading cause of bankruptcy in America. Let's talk about misleading insurance policies. Let's talk about the people who are forced into nursing homes because of the institutional bias. Let's talk about the politicians we elect who ignore the views of those who voted them into office and instead cater to insurance lobbyists. These subjects are worthy of intense discussion.